Family Recovery
1. Diagnosis: Shock – Grief – Despair – Anger
The life of your family has just changed forever. Your child has been diagnosed with a disabling condition. There has been a car accident. Your spouse has been diagnosed with cancer. Any one of these scenarios will alter your world. You can’t understand it. Everything seems to work differently now. You follow the lead of the medical and therapeutic communities toward unfamiliar goals. There is no sense of certainty about the future.
Often, medical services at this stage are delivered in a “top down” fashion. In some ways this is necessary, since families in this stage of a crisis 1) generally do not have any previous experience with the complexities of critical medical service delivery, and 2) are often in a state of shock, focused on immediate survival, family relationships, and support.
The pressure to provide early intervention can lead to physicians working in isolation from each other and from family stakeholders. It is understandable that doctors may miss opportunities for consulting within and across disciplines. The information provided to families is often bottom-line information, the implications of which can only be derived by experienced medical professionals.
2. Treatment: Survival – Desperation – Isolation – Uncertainty
The early stages of treatment for disabling conditions are vital to the long-term outcome. Along with the need to choose and execute the optimum treatment program, there is a pressing need to establish social services, insurance coverage, financial support, and family stability. You move through the complex systems and schedules that may hold the promise of healing and recovery. Strangers and unfamiliar settings take over your daily life. Your home is not the private space you have come to know. But disability and disease are dynamic. Just as you get oriented to one routine, it changes. The answers to your questions can never be clear. They only raise more questions.
At this stage, there are often expectations that the family will become more directly involved in day-to-day medical care. In the more complex cases, a network of services comes into play, each with its own ways of initiating and training informal family supports. Family members are challenged with learning certain medical procedures, along with nurturing typical family relationships. They are called upon to distinguish between the clinical setting where the doctor is in charge of care, and the home setting where the family is in charge of care.
Even as some of the care is transferred to the home and new responsibilities are taken up by family members, there is still an expert hierarchy in the clinical setting that influences how information and training are given to the family. In addition, there can be some confusion from the variety of services providers and equipment vendors because of the amount of information and the different styles of conveying the information.
3. Outreach: Education – Support – Perspective – Vision
As treatment routines become more established and progress is evident - even slow progress - you begin reaching out to the broader community of people who live and work with disabilities. You begin to see that there is a community of services that may be able to help. In this middle ground, progress and understanding are inconsistent. There are times when you feel hopeful; the puzzle pieces fit together. There are other times when the vision seems to fade and the road ahead seems a greater distance than what has already been traveled.
4. Confirmation: Action – Clarity – Refinement – Tradition
Through the daily struggle of living with disabilities, there comes a time when successful outreach and treatment lead to a sense of renewed routine. Each successful step confirms that your new way of life is manageable - even rewarding. You now understand enough about your new world that you are able to direct some of the process. The community team that has formed to provide support relies on you for information and guidance. Your family is now an expert
family.
5. Leadership: Empathy – Generosity – Ingenuity – Recognition
Having survived to this point, you look for ways to use your family expertise more broadly. In the busy schedule of appointments, you see others who are in the Diagnosis stage or the Treatment stage. You understand immediately what they are going though. Your instinct is to engage further in the community. As you start to see the results of your community leadership, you realize that you have evolved from Victim to Rescuer. You are there for people during their Outreach stage.
